My Journal - Chapter 1

Dec. 4, 1993:

How many times have I gone to bed this last couple of weeks and wondered if I'd find mom dead in the morning.  Espically the last two nights.  I wish I'd started writing the day Dr. Schor called me and said he couldn't see putting her through any more treatments.  That radiation would do her more harm than good.  There's been so many precious moments.  I wish I'd written them down as they happened.

10:30 Sat. morning  12-4-93.  

I had eaten breakfast with Ross, the first time in a couple weeks.  Usually I do every thing I can in mom's room.  I was going to the bath room and from habit, I glanced into her room.  I couldn't see her feet on the bed.  I almost panicked.  I went in and found her legs swung over the side of the bed.  I asked her  "Honey, are you trying to get up?" A  little weak nod of the head told me "no",   her feet just went over when she tried to turn herself.  I got her back in a good position and began talking to her.  I told her I loved her and with my knees up in her water bed I said, "How about a hug"  her little skinny arms went around my neck, her hands clasped and she held onto me for the longest time.  I begin talking to her softly.  I said  "Mom, do you know how much I love taking care of you?"  again, that weak little nod of her head told me "yes".  I said, "God has really blessed me to allow me to take care of you and I'm so thankful. After all those years you took care of me, God is allowing me to repay just a small part.  I hope you know that I'm in your room almost all the time.  (again that little nod) That's because I don't ever want you to be alone."  Her arms still around my neck, she got that look on her face that told me she had to potty.  Amazing, the way we can communicate, now that her speech is almost gone.

I had to break her hold on me so I could get her up.  I'll never know how I manage as well as I do.  It's like moving dead weight and I have had a couple days of really bad back pain but, So be it ! 

Now I sit here beside her bed, she's back in bed sleeping so peacefully.  Her oxygen is off, yet she breathes so evenly.  Maybe the hug and our little talk did it.  I hope so.

As she lingers and I have time, sitting by her bed I want to recall some of the most precious moments for memory.  But now, I want to clean her room.  Let lots of light in through the window and  turn to channel 12 (the religious channel). I want lots of life in this room.

1:30 pm

I'm finally back again in my lounge chair beside mom's bed.  I discovered she had wet the bed a little.  No wonder, I gave her a sleeping pill last night and night before.  I didn't let on that I could smell urine on her, just gave her a bath.  It was so hard on my back.  My head tells me I should put her in the hospital bed but my heart won't let me do it.  She hates that bed so much.  Ross had to hurry and make the bed while I held her up on a kitchen stool.  I'm sure I hurt her frail little body trying to move her by myself.  If only I could move her to the other bed and keep a clear conscience, but I can't.  I guess I'll have to break down and ask Hospice to send a nurse every morning to help me bathe her.  I so wanted to take care of her until she dies.  She and I have developed such a closeness these last few months.  We've been together the last 18 years and I want to go the whole way with her.

I get a little afraid though, like when the nurse took my blood pressure and it was 150 over 100.  I never knew I ever had blood pressure problems.  The 2 days and nights my back hurt so badly I was so afraid I wouldn't be able to keep taking care of her, but I just pull my support belt a little tighter and keep on keeping on.  God has given me so much strength, I couldn't go on without Him!

5:30 pm.

I just got mom's bed changed again and her gown.  She was able to tell me she needed to tee-tee but not in time.  She was able to sit on her potty by herself until I could get the bed changed but as usual for the last 2 days, Ross had to help me get her over in the middle of her water bed.  I have the bed spread washing now and came in to talk to her.  I reassured her she doesn't have to be embarrassed.  I reminded her of the times she's washed tee-tee off of me.

The first visit the Hospice nurses came was 11-11-93.  I've kept records since then of food and water intake and B.M.s and urine out put.  As I look at the chart, I can almost pinpoint each time she gives up something else.  She started out eating 1 egg and half a piece of toast a day, or a whole cooked apple, or some sweet potato and up to 26 oz. of fluid a day.  It went steadily down until 11-28 and 11-29 she had 1 teaspoon or less and no food at all since then.  Her water is limited now to enough water to swallow a sleeping pill and what she can get out of the little sponges I use to wet her mouth.  About the 29th. she stopped trying to take medications at all except pain medicine (which she rarely needs) and I just give her the sleeping pill, if I don't she's awake all night and she or I either couldn't keep up that pace.  When I saw the embarrassed, hurt look she had when she wet the bed I had to leave the room and cry for her.  She's always been so clean and so modest.  It breaks my heart to see her like this. 

I know that God can do anything.  I'd love it if he'd heal mom and let us keep her around for a long time to come, but my prayers have been almost a desperate plea.  "God, if you're not going to heal her, please take her home.  She wants to go and certainly she's ready.  Evidently God isn't quite ready yet.  I'm so thankful for Ross.  He's so understanding and helps all he can.  Because of her dignity he is limited.

Kitten (my niece) has been a big help too and our church has been so very supportive but when all is said and done I still feel like I'm going through this all alone.   Some where in the depths of me, It's so private that no one is allowed in except God.  That's why I always say without God I'd never make it.

Dec. 5:

10 am.   We got through the night without any medication.  Mom didn't sleep well but she wasn't in any pain. Of course when she doesn't sleep, I don't sleep.  I must of been up with her to potty 3 times but she didn't wet the bed.  Never the less, the smell of urine is strong.  She can't use toilet paper any more and it's all I can do to hold her.  She doesn't want to be cleaned up but I can't stand it knowing how clean she's always been.  How I hate "making" her do anything.  She's still the mom and I'm still the daughter but it seems it's reversed now.

Sis. Nora and Janice visited on Dec. 3rd.  Nora told me I should keep a journal.  I believe she was right.  I only wish I'd started sooner.  Nora said she could feel the presence of God and angels in the bed room.  I believe the angels are standing by, waiting for God to say "it's time, bring her home."

I try to get her to talk.  I know she can,  occasionally a word slips out.  But she just doesn't want to talk.  She won't ring her bell any more either.  I have to stay pretty much around the clock in her room.  I'm so afraid if I leave her side that's when she'll die.  I don't want her to be alone when she dies.

I'm remembering back to when daddy died.  21 years ago.  I came home and tried so hard to help take care of him for 3 weeks.  Sat in his hospital room all night so many times.  Still he called me a b---- on his death bed.  Even though I don't think he knew what he was saying, I  guess I'll never get over that.  I try to tell myself it's okay to put mom in the hospital bed where I can better care for her and at the same time not hurt my back so much.  Then I remember how I felt when daddy called me that awful name and I can't stand the thoughts of mom dying mad at me.

"God won't you please heal her or take her home?"  I can't stand seeing her like this.   She's lost all her pride and dignity, she doesn't eat or drink or talk.  This is so hard.

The last 2 hours have been worse than anything I've ever gone through.  I got mom up to potty.  It was such a struggle.  I decided to go ahead and clean her up, change the bed, and clean the room.  She didn't want me to but I couldn't let her lay smelling bad.  By the time I got her bathed on the water bed my back hurt so badly I could hardly stand it.  I hugged her and cried and talked to her.  I begged her to understand and not be mad at me.  I explained that If I got to where I couldn't take care of her she'd have to be in the hospital.  I said "I don't want that mom.  You don't want to be in a hospital, do you?"  She shook her head "no".  I said  "Will you please try to understand why I have to put you in the hospital bed and not be mad at me?" she nodded "yes".  I was crying so hard and that's when I discovered something.  I've wondered why she never cries.  I've seen a look of pain on her face from time to time but when I asked if she was in pain she always indicated she wasn't in pain.   She was crying but she was unable to make tears.   I know she was crying with me this morning.  How awful that must be.  I have cried for an hour and there seems to be no end to my tears.  My heart has never been so broken.  

I know I won't be able to sleep in her water bed knowing how much she wanted to stay in it.  Until she dies I'll probably sleep here in the lounge chair where I've sat so many hours watching her breathe, wondering if her last breath would come while I just sit here unable to do anything for her.

Ross came home from church around 12:30.  I broke down again in trying to tell him about putting mom in the hospital bed.  He put his arms around me and let me cry awhile then started praying for me for peace of mind, to know I did the right thing.  He left me in the living room alone and after a few minutes I went into mom's room and there he was, bent over her bed hugging her.  I asked her if she wanted us to turn her over.  She'd faced the wall the whole time.  She nodded yes and when we turned her over she put her arms around my neck and just held on for the longest time.  In fact I had to finally move her arms so I could straighten my back.  She was telling me it's okay.  I don't have to feel bad about putting her in the hospital bed.  God sure answered that prayer quickly.

I do have peace of mind now but the tears haven't dried up.  I get a feeling they never will.  She's so precious to me and I sit here day after day and watch her dying.  "God please take her peacefully in her sleep and soon Lord, please."  If I think this is hard on me, it's much worse for her. I've tried to sing some every day so she could hear.  That always soothes her.  I hope I'll be able to remember all the precious little moments of this last month so I can write them down to be a blessing and comfort to me long after she's gone.

About two weeks ago I had put her in the hospital bed at the nurses request.  She had told me she would breath easier with her head up.  She stayed one night and I was in the water bed.  Sometime in the wee hours of the morning I heard her weak little voice say, "why couldn't I just crawl in behind you?"  Needless to say I just melted and said "okay mom I'm coming after you."  I put in bed with me.  She slept with her hand on my shoulder the rest of the night.  We both slept really well that night and the next but the third night I felt I was crowding her so guess who has slept in the hospital bed ever since, Yeah!  Me!   Until this morning.

It seems now every time I go to her bed she puts her arm around my neck until I have to move it because my back hurts.  She seems to be resting peacefully.  I'm praying that God will take her home while she sleeps.  Maybe she feels it will be today.  Maybe that's why she keeps holding onto me.  Her face looks different somehow.  I guess peaceful is the only word I can find to describe it.  

 7:30 pm 

Mom has been so good today.  So loving.  She's beginning to open her eyes a little and speak more in sentences rather than one word answers.  She's still hugging me a lot.  I love that.

Preacher and Janice stopped by before church and had prayer.  As I just sit here in her room I start remembering again.  The night Doctor Schor called me.  A nurse usually calls during work hours but he called himself.  Probably about 8 pm from home.  I half expected what he said but still I got weak in the knees and my heart was pounding as I tried to carry on a conversation with the doctor.  When I hung up the phone I decided to fast 3 days for mom and for Ross.  I really felt that God was hearing my prayers.

I remember one day when mom was on a pretty good pity party before she got so helpless, she tried staying in her room in the dark all the time.  I got really upset with her and I guess I lectured her a little.  I asked her what she was thinking and she said "what's the use? Dr. Schor won't give me any time."  I reminded her that only God could do that and I said "you can't sit around here waiting to die, you have to live until you die.  No matter what, until that number by your name comes up, You have to live."  I think it sort of jolted her out of her pity party.

At another time I remember seeing that blank look in her eyes and I said, "Mom, do you think about dying?"  She said, "sometimes".  I asked her if she was ever afraid, "No not really,"  she said "But I wish if God wasn't going to heal me He'd take me on."  I said, "Mom, I'm praying for that but mostly I pray that you'll be healed because If it's your time to go home, I'd sure miss you so much." I will miss her, she's been so much a part of my life these last 18 years.  Ten of those years it was just  the 2 of us. 

Ross brought home the Christmas tree tonight.  It's beautiful.  With roots for planting later.  I asked her if when it's all decorated we could put her in the wheel chair and take her in to see it.  She said yes.  How I hope she'll live to see the tree all lit up.

Dec.6:

Well, another night has come and gone.  I gave mom half a sleeping pill.  She rested well, but was alert enough to get up to potty once through the night and around 6 this morning.  Ross has gone to get his upper teeth made today.  My Christmas gift to him. His gift to me is my key changer that I've already used a couple of weeks.  I think I'll get mom some bubble bath and wrap it and put it under the tree.  It's been so much easier to care for her since she got in the hospital bed.  Her attitude has changed too.  I'm sure she still hates that bed but she loves me very much and when she saw me crying and in pain that was much stronger than the hate she has for that bed.

Every time Ross has to be gone for several hours I begin to think, 'will she die while I'm alone with her?  How will I react?  Will I handle it well?  I have to have the Hospice number by the phone here in the bed room.  I think I'll stay calm and take the time waiting for them to just kiss mom and tell her good by and thank God for allowing me these last precious moments with her.  That's how I'd like it to be.

I was determined last night not to sleep in Mom's water bed, I couldn't let her think I moved her to the hospital bed so I could have her bed.  I lay back in my lazy boy chair until the wee hours but my body got so tired I finally did, about 4:30 or 5 o'clock this morning.  Got a tremendous head ache, I think it was "All in my head"  when I set a goal for myself, I hate falling short.

Among all these precious moments there's one not so precious moment and being an honest person, I'll record that too.  It was before mom got so helpless.  She could still walk by herself if there was a lot of things along the way to hold onto.  But I constantly worried that she'd fall.  So let me admit right up front that I was a little over protective.  I tried so hard to get her to ring her bell when she wanted to get up so I could at least be there in case she started falling.  I could grab her.   Every day, time after time she'd go stumbling by herself instead of calling me.  But the day I came into her room and there she was dragging a big floor fan from the other room, I lost my temper.  "What do you think you're doing?!  (said very angrily) If you won't let me help you, just what do you want of me?"  She answered me very calmly, "Let me help myself."  I was so upset my heart was pounding.  I could just see her falling over that big fan with maybe a broken hip.  I yelled and cried.  "Okay!  help yourself and when you break something and I can't take care of you, you'll end up in a home somewhere.  But go ahead, help yourself!"

With that I went quickly through the house and found my purse, grabbed the car keys, looked at Ross and said, "you take care of her, I'm leaving."  I did just that.  When I got to Tazewell, VA. Magic Mart I called to let him know I was alright and said I'd be home soon as I shopped a little.  I bought her 3 new dusters.  All her old ones were getting too tight across her tummy because of the tumor growing there. Then I drove home.

When I got home I had a long talk with mom.  "Mom, I'm so sorry about yelling at you and I promise you, I'll never do that again.  But you've got to realize that my greatest fear right now is that you'll hurt yourself and I won't be able to take care of you.  It would absolutely break my heart to have to put you in a home.  I admit that  I've been over protective and I'm going to try my best to let you do everything you can for yourself and when you need me, ring your bell and I'll be right there for you.  Will you forgive me?"   She said, "there's nothing to forgive."  and she hugged me.  I guess after all that was a precious moment.  Mom is such a stubborn, hard headed,  self sufficient person.  Being helpless has got to be so hard on her.

6:30

What a day!  The Hospice nurse came today.  At the same time Roger  and Ernie visited with me.  When the nurse realized that mom hadn't had a B.M in 5 days she used a suppository on her.  I had a nice time of fellowship with Roger and Ernie and the nurse left.  Mom was so restless.  I finally gave her half a sleeping pill thinking if she was going to use the potty she would have already.  She calmed down and was resting so well.  Ross finally got home with his new teeth.  We decided to read the bible in her room.  I noticed her stretching her legs  and went over to see if she wanted to turn over and she said she had to get up.  That's when I noticed she had already had a BM all over herself.  I finally got her cleaned up enough to get her duster on.  Then I called Ross to help me.  We got her up in the wheel chair and I quickly changed the bed and got her back.  My heart just breaks for her.  How humiliating that must of been for her.  I know if she could make tears, she'd probably cry a lot. I probably cry enough for both of us. 

I went over to the bed a few minutes ago and asked if she needed anything.  She said she "no".  I said "Well, I need a hug."  Her little arms went around my neck.  I said, A little hug always helps, doesn't it?"   She nodded a yes and held on real tight.  I love that precious little lady so much.  I'm going to miss her so very much.

8:30 pm.

Another BM. in bed.  Just got her cleaned up again.  I'm so tired.  A nurse better not come close to her with a suppository again.  I had to give her pills to stop that and now this room smells so bad.  Not to mention I'm completely worn out.  Every one keeps telling me it gets harder every day.  I already know that.  But no matter how hard it gets, if God will just give me the strength I will take care of her until she dies.

Dec. 7:  5:45 am.

I've been so sick most of the night.  Such a headache.  Then sick to my stomach.  I went into the bath room and looked into the mirror.  My face was so white it scared me.  I used a compazine suppository and it helped.  But I asked Ross to come into mom's room with me.  I think I've been in this room too much.  I wanted to go for a drive at 5 this morning but he thought it wasn't wise.  He was wrong!  I just needed out of this room and out of the house a few minutes but I didn't argue. I just didn't go.

I did manage to get mom up to potty this morning.  It sure did hurt my back.  Then Ross sat in the chair by the bed and I slept a little.  I pray so hard that God will take her home before I get to the place that I can't take care of her and I must admit, It's getting so very hard.  Ross keeps telling me to get a nurse in here full time but I know mom would rather have me take care of her.  I lay here through the night and listened to that rattling sound coming from her throat.  Not constant but very often and this morning I know it's the 'death rattle'.  I put a cool air mist humidifier in here and put a little water filled sponge in her mouth.  I use a cool wash cloth on her face and forehead and pray.  There's nothing else I can do.  I feel so helpless.